Very sick with long COVID, POTS/PEM; low-dose treatment and pacing helped, then relapse
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- Dec 2025
In their words
- Condition: Long COVID
I’m a long hauler from March 2020
In context ↗ - At worst: Moderate
I just have to get the chore done and then go prone again with electrolytes.
In context ↗ - Now: Relapsed
some of us live in daily hell for over 5 years.
In context ↗ - Began after: COVID
I got it in early March 2020 while living in a very busy Seattle Neighborhood.
Read from 25 of their posts and comments; links to the 17 this page draws on
Summary
They got COVID in March 2020 in Seattle, were extremely sick for about seven weeks, and never fully recovered, being diagnosed as a long hauler. Pushing through brought POTS and PEM, and reinfections set them back. A low 500 mg daily dose gave moderate improvement in tachycardia and fatigue, pacing helped some, and over five years on they still described daily hell.
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What they tried
What they credit
Also tried
Their words about each treatment
- electrolytes + hydration · Helped
I MUST be hydrated everyday with electrolytes
In context ↗ - complex B vitamins by liquid shots · Helped
copious complex b vitamins by liquid shots
In context ↗ - HBOT hyperbaric oxygen therapy · Not said
I just started my first HBOT hyperbaric oxygen therapy session of many in hopes this will help.
In context ↗ - paxlovid · Helped
I was able to get paxlovid pretty quickly which helped me with me.
In context ↗ - carb limiting · Worse
I got worse with carb limiting.
In context ↗ - monitoring my heart rate and staying within my LC range · Helped
I tiptoe within my LC range and try to not over do it. It’s helped some
In context ↗ - novavax · No change
Got my novavax. No effect. No bad side effects thus far, but no change in my LC.
In context ↗ - metformin · Helped
I do low amounts 500 mg a day and showed moderate improvements with tachycardia, and fatigue.
In context ↗ - antidepressants · No change
I’ve been on that medication for years and it doesn’t do sh|t for long covid
In context ↗ - pre and probiotics · Helped
I’m on potent pre and probiotics because it helps in other ways
In context ↗ - the vaccine · Helped
I got the vaccine. Short term gains from it but I wasn’t harmed by it like some.
In context ↗ - time · Helped
Took me about 3 over years to get decent sleep again after my covid infection in 2020
In context ↗
Approaches: POTS medication · Antivirals · Pacing · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| March 2020 | COVID infection; extremely sick for about seven weeksI was extremely sick for about 7 weeks and it took a minute to be able to work full time.In context ↗ | |
| late May 2020 | back to full-time work but never fully recovered; doctor called it long haulerswho was able to see that from me initially recovering, but never really fully recoveredIn context ↗ | |
| — | worst crash after pushing too hard; POTS and PEM diagnoseduntil I got hit with the worst crash ever and since I’ve had PEMs and pots dxIn context ↗ | |
| before August 2023 | making decent strides in recoveryI was making decent strides in recovery until I got infected a couple weeks ago.In context ↗ | |
| August 2023 | COVID reinfection after weeks of improvementI’m working on making sure I don’t loose all of my improvementsIn context ↗ | |
| November 2023 | moderate improvement in tachycardia and fatigue on metforminI do low amounts 500 mg a day and showed moderate improvements with tachycardia, and fatigue.In context ↗ | Metformin |
| December 2025 | still ill more than five years onsome of us live in daily hell for over 5 yearsIn context ↗ |
Adverse events
- Elimination diets (other)“I got worse with carb limiting.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“We doubled my antidepressants but I couldn’t take it. It was messing with my already messed up fatigue and other things.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I don’t do well with ssri’s.” In context ↗ Side effects
- Metformin“I did have some digestive upset. I had to be near a bathroom especially 2 hours after taking it.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I pushed myself into a POTS/ PEM diagnosis
In context ↗ - POTS & dysautonomia
since I’ve had PEMs and pots dx
In context ↗ - Gut problems
My stomach issues actually have been a little better, except for this and continued belching
In context ↗ - Sleep problems
Took me about 3 over years to get decent sleep again after my covid infection in 2020
In context ↗ - Heart symptoms & palpitations
showed moderate improvements with tachycardia, and fatigue
In context ↗ - Anxiety & low mood
We doubled my antidepressants but I couldn’t take it.
In context ↗ - Pain & fibromyalgia
I’m trying to biohack my wat to less pain
In context ↗
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